If I improved my sleep (from a health condition defined by unrefreshing sleep), you can, too.
My sleep was pretty good, until I got a flu-like illness in Spring 2016 from which I failed to fully recover. For the next 3 years, I would spend an hour tossing and turning each night trying to fall asleep. I’d then wake up somewhere between 3 and 4 am and stay awake for hours, with stress chemicals shooting through my body that I couldn’t seem to calm. If I was lucky, I’d drift into a nightmare or two. Around 8 am, a cement wall of tired would hit.
I’d eventually be diagnosed with ME/CFS, a metabolic and neuroinflammatory disease caused by a block in the healing cycle after illness or injury whereby post-exertional repair mechanisms break down. One of the symptom requirements for an ME/CFS diagnosis, in addition to post-exertional malaise (also called “crashes”), is unrefreshing sleep not explained by lifestyle factors.
I tried to do everything right, avoiding all added sugar and eliminating caffeine, using screen dimmers, moving my body as much as I could, meditating, installing make-shift black-out blinds, but I was stuck in The Upside Down. If you have ME/CFS, you are all too familiar.
It turns out, there were other important things I could have been doing (none of which involve drugs or special supplement powders). I now sleep soundly through the night.
1. I bought the book “Sleep Smarter” and applied almost everything in it
My friend Lorie Solay, an Oakland-based mindset coach, told me “Look for the recovery stories.”
I found James. James has an awesome no-budget YouTube channel called Health Recovery about how he healed from severe ME/CFS and related/downstream (adrenal fatigue, reactivated childhood viruses, POTs, autoimmunity) conditions. It’s full of truth bombs and gems. James says fixing his sleep was essential to his recovery. He applied the advice in Shawn Stevenson’s book Sleep Smarter, after listening to him speak on a podcast (here is the video which James mentions it).
I bought the book and was blown away. There were some important things I wasn’t doing. There were also a couple things I definitely should not have been doing (which most of us do). Sleep Smarter contains the most comprehensive, actionable sleeping tips backed by science and is an excellent, enjoyable read.
Here are a few of my Sleep Smarter-inspired habits:
- My bedtime is now the same time as it was in 5th grade. (I don’t wait up for my husband.)
- I get direct sunlight by 8 am, if possible. (It’s apparently important to let your body know what time of day it is.)
- My physical activity is now highest in the morning and around 6 hours before bed, when it’s the most effective for a good night’s sleep. Not midday, when it used to be.
- I stop screens a full 2 hours before bed.
- I keep calm throughout the day. Less Stranger Things (if you didn’t catch The Upside Down reference), more books and boardgames.
I cannot provide personal insights into getting sunlight for those with significant light sensitivity, since I did not have this issue by the time I applied this advice. But I’ve been there my friend, with the black t-shirt over the eye-mask. The book says we have photosensors in our skin, which might be something to consider with your helper, one toe at a time. You are the only person who knows what’s best for you!
I also mention “physical activity.” For people with ME/CFS, I do not mean exertion. The consensus among ME/CFS recoverers, including those who have fully healed like James, is to always go easy and avoid intense activity during recovery, keeping your heart rate calm. This could mean deep breathing in bed or, for those with more mild ME/CFS, a short walk. This also might mean pulling back and resting, if needed.
The book explains how one’s heart rate is highest first thing in the morning. What worked best for my recovery was to first give my heart rate time to lower, by going through my calming morning rituals (which I’ll share in my very next post), before doing any physical activity.
I encourage you to get Sleep Smarter for yourself, which provides many other good tips, all with scientific context.
2. I moved to a dry, sunny home
Getting complete lab testing for environmental healing blockers and resolving them was key for my health recovery and also helped my sleep. One of the several lab test results that came back elevated (the highest my ME/CFS specialist doctor in Georgia had seen) was for byproducts of an invisible-to-the-eye type of mold found in multiple locations by home testers who came later that week. The lab tests that identified it were the C4a inflammation marker blood test and the Great Plains Lab MycoTox urine test.
When I left my charming, turn-of-the-century, leaky bungalow rental soon after for a 5-year-old sunny apartment (I didn’t move to a brand-new place since my brain had heightened reactions to building smells) taking very little with me (just our dish wear, some clothes we could wash and dry very hot, and some key documents in ziplocks), I was able to breathe more easily at night. I also no longer had the urge to pee three times per night. This improved my health and sleep quality.
A couple months later, I would learn that an inflammatory response to long-term “environmental visitor” exposure can injure the brain similar to actual head trauma. My now husband didn’t have this response to the “house party guests,” and I’d later learn more clues why.
3. I did a brain injury recovery program every day for an hour
The Dynamic Neural Retraining System (DNRS) is a self-directed neuroplasticity program. This program calms my nervous system like nothing else and has helped me build healthy neural pathways. It consists of ten talk-aloud steps (you can say them in your mind), seven which come from a script and three from your imagination.
The second day I did DNRS (10 rounds per day ~6 minutes each) while applying my learnings from Sleep Smarter, was the first time I slept through the night in years.
DNRS, just like the sleep hygiene tips in Sleep Smarter, requires openness to try something new and consistency. The program encourages a six-month commitment. I continue to practice my DNRS rounds for 20-30 minutes per day post-recovery because it makes me feel good.
Working on my sleep is one of the best investments I ever made in myself.
By optimizing conditions for sleeping and practicing them consistently, I was able to improve my sleep quality, thereby improving my body’s ability to repair itself (felt when I woke up the next morning), and help push it into its natural healing “rest and digest” state.
Fixing my sleep was a cornerstone of my recovery and has been key to my continued thriving.
Sleep keeps me accountable. If I cheat, for instance, and go into an Internet rabbithole at 9 pm or skip most of my morning routine, it will be the first to decline. Now that I’ve regained full health for quite some time, I see my healthy routines as an investment in my daily wellbeing and long-term ability to handle whatever comes my way.
It is possible to improve your sleep. I did it.
If I got out of The Upside Down, and into a natural circadian rhythm, there is hope for you, too.
Because sleep is so important, I plan to do a future post on my sleep journey breaking down how I adjusted to an earlier bedtime, what I have done if I’ve woken up with “wired” feeling, and fun things I do at night in lieu of staring at a screen. Ultimately, we all have to figure what works for ourselves through some trial and error. You can stay tuned to future posts by subscribing to our newsletter.